19th December 2013

My word! It's been nearly a year since I posted on here, and I really am truly very sorry, and I'm sure there will be a few people that are wondering what happened!!

Well I left you all on a bit of a cliff hanger really, but you cannot imagine how busy my life has been this past year, how many appointments we've had, or people we've seen!

Let me start by first telling you all that Aydan's PEG operation was successful! It wasn't very nice, and he was in some pain for a fair few weeks after having it done, but after catching MRSA it eventually healed up nicely!

After lots of physio we were eventually allowed out of Alderhey and sent back to Leighton hospital at the beginning of April, where we received a very warm welcome back from the staff there! They were all very pleased to see him, and one of the nurses who was with him the night of the ordeal came in to work and came straight to see him! 

We finally, after a total of 5 months, got to come home after spending only 3 days at Leighton! I will admit that it was a little scary at first as Aydan was surrounded by many new things! He still required oxygen, he had a sats monitor, and a feeding pump! It didn't take long to get used to them, and if I'm honest I actually slept much better at night knowing that the alarms would go off if something was wrong! Whereas before we had nothing!!!

Aydan at this point, although he had come a remarkable way, much farther than anyone could have hoped, was still a shell of how he was before! I stopped watching old videos of him because it would remind me of how he was before, and it would upset me! It still upsets me now! He could still laugh and he would briefly look at you, but for the most part he was trapped in his own little world. 

We were not at home long before we made the decision to go on holiday and get away from it all. It was the best holiday of my life, and being away from hospitals and appointments, and to just be a family again was what we needed! Aydan was so happy and smiley, and enjoyed every minute!

Not much longer down the line and Aydan caught a chest infection so was back in hospital. :0( 

The good news was that we we're let home again after being given antibiotics, as we had everything we needed at home anyway and was safer because of fewer bugs!

Aydan had frequent home visits from physiotherapists, occupational therapists, dietitians, health visitors, speech and language therapists, and over the past few months he has become stronger and stronger! We managed to get him back having hydrotherapy classes back in September and he is tolerating being in the water more and more. 

Some point a few months ago, I can't remember when, he went back to Alderhey to see the respiratory consultant. Aydan had decided a few months back that he didn't want his oxygen anymore and kept pulling his nasal cannula out!!! He was tolerating being on air really well! The only time you notice a problem is when he is lying on his right side, he is squashing his good lung and that can make his oxygen levels in his blood drop :0( other than that she was really thrilled. 

Sadly a chest X-ray confirmed that his left lung was still damaged and probably always will be now. He has now acquired the 'chronic lung disease label' because of this, but considering he isn't having oxygen at the moment that is a really positive sign! 

He has also recently had a hearing test and eye tests, and he has passed all those with flying colours :0)

Aydan is currently having child development sessions with various people and this is their plan to help crack Aydan out of his shell and try and work out how we are going to start communicating with him again as he can often get really frustrated!!!! He loves these sessions immensely and the staff have to run around chasing him! It can be really funny!! 

Aydan is no longer having milk through his PEG and hardly sees the dietician at all anymore because he is back eating and drinking pretty much normal again now! 

Not that long ago Aydan got to see his neurologist (Dr. Curran) and he was absolutely thrilled with Aydan's progress that he has been discharged from neurology!!!! So exciting! Let's hope there's no more developments for him! 

Well after all that exciting news I will round it all up and give a brief explanation of how he is now! He's due to go for a PEG change in the next couple of weeks, he will have a smaller one called a MICKEY button. 

Aydan still cannot walk, but he tries so hard and can definitely cruise :0) he is still very much in his own little world, but the breakthroughs are more and more often and he is starting to babbles a few very nice sounds out! :0)

So there you go, a very short post describing in brief the past 10 months :0)

I shall finish by adding a picture of him! 

11th February 2013

Today we got to meet the Gastro team again.

They have managed to book Aydan in for a PEG tube (tube that goes into his stomach through his belly) and this operation will take place on the 28th of February.

Although this sounds a bit drastic, it will actually make his life so much easier, and as he was on a ventilator for so long they expect it to be a while before he can drink liquids again!

To prove why having a PEG fitted will be better for him, Aydan decided to pull out his NG tube again today!  

Little Monkey!!

Daddy was very excited to report that Aydan had followed him briefly with his eyes.

This is very exciting as we have been warned that he may be blind after all the brain damage he has. 

8th February 2013

Aydan received a very special package from a charity called Pop 'N' Grow today.

This charity makes special pajamas for special children

As you can see in the picture he has popper in his sleeves and sides which is great for children who need cannulas and other tubes etc.

You can see this charity here

http://www.popngrow.co.uk/

I have also managed to take this amazing photo of all the children together.

Aydan looks so happy :0D

7th February 2013

Today Aydan's withdrawals have been awful again.

It seems that some doctor thought it would be a brilliant idea to stop him having any sedation during the night 'because he is asleep anyway'

So now we have had him wide awake for hours :0(

His heart rate has been scaring me and has been jumping between 130 and 255 most of the evening, and he is clearly very unsettled.

I have had a word with them and have said that I only want the pain team assessing where he is with the sedations now.

Today he has also had a mysterious rash appeared and has been really puffy, and his oxygen need has doubled :0(

My poor little squish! 

It's just one thing after another at the moment. 

6th February 2013

Aydan had a very special treat today...

DAISY THERAPY!!

You can see on his picture how happy he is that she is sat next to him, and his body language was great!

There was lots of arm movement, moving his eyes and, well, he just looked so happy it was amazing!!

:0D :0D :0D

Speech and Language therapist has been to see him today and has decided that he is definitely not ready for food just yet.

At least I feel like someone isn't trying to rush him!!

5th February 2013

Another day, another EEG

but LOOK!!!

he's wearing pajamas!!!

His expression is saying 'I look real cool'

:0D

4th February 2013

Today was a very exciting day all round!!

My 2 older children have managed to get into a local school and have started today.

This means that we only have Daisy to entertain during the day now, and as you can see she has been washing Aydan today. :0)

She said 'I want to help you look after Aydan when he gets home.'

Bless her! :0D

I managed to get sneaky cuddles this afternoon.

I pulled the curtains around us, and then climbed into bed with him.

There was lots of happy moans from Aydan and it was only a couple of minutes before he went sleep! :0)

3rd February 2013

AYDAN HAS BEEN MOVED OFF ICU TODAY!!!!

:0D :0D :0D

He is now on Neurosurgical HDU.

Here he is in his new home!

1st February 2013

*SIGH*

Another day, yet more bad news :0(

Aydan's neurologist has taken me into a side room to talk to me about his recent MRI scan.

It seems that Aydan has lost a lot of brain mass from the previous MRI they did 2 weeks ago, and they believe this to be conclusive of cerebral atrophy. :'0(

Basically it means that his brain has wasted away and shrunk quite a lot.

This means that he is a lot more brain damaged than we first originally thought, and sadly there is no cure for it, we can only hope it improves with time.

I was initially upset over this news, but when I went to see him again he was smiling his head off and cooing at Peppa Pig.

At the end of the day so long as he is HAPPY then that is all that matters to me! :0)

31st January 2013

Aydan is still doing amazing off the ventilator.

Unfortunately thought he seems pretty wired and hasn't slept since he was extubated!!

I suspect it's withdrawal as you get a lot of insomnia with that.

His temperature is much more stable lately and has been around 37.5!!

I knew that being on that cooling mattress for so long was bad and that his temperature would even out on its own if they just left him to it! :0)

Mummy's instinct win again!! ;0)

On another note we have been told that now he is off the ventilator that we can have as many cuddles as we want, but we have decided to take it slow for now because he needs to practise his breathing again.

30th January 2013

I am pleased to announce that Aydan has now officially been EXTUBATED!!!

Here is a picture of him wearing his nasal specs :0)

He is now on a special machine called 'optiflow' which is like high flow oxygen through his nasal specs, but they warm it up and humidify it for him so it's not too painful on his nose.

The next 48 hours will show how well he copes, and if he makes the 48 hours he should be headed the right way :0D

28th January 2013

Today I walked onto the ward to see that Aydan had some 'boxing gloves' on his hands...

apparently he has been a little monkey and has been trying to pull out his ventilation tube again!!

I can't say I blame him really!!!

Aydan had his micro bronchoscopy this afternoon, and I am pleased to say that bar a tiny amount of swelling, and some granulation on his vocal cords, everything is looking good for extubation.

They have decided not to do it today though and have been giving him some medicine which will help to reduce the swelling in his throat first.

I was very excited this evening as he actually managed to turn his head to look at me!! :0D

my little man really does make me proud every day! :0D

27th January 2013

Nothing exciting really happened these past couple of days so I thought I would just show you a picture.

:0)

The ward this end is pretty much empty and very quiet, which is quite nice!!

I have been talking to one of Aydan's consultants today and there are talks of sending him for a micro bronchoscopy, which I believe is like a normal bronchoscopy, only a lot smaller which will allow them to go further into his lungs.

They think he might need a tracheotomy because of how long he has been on a ventilator for.

They think his throat might be quite swollen and floppy, so depending on the results of the micro bronchoscopy, depends on what they will do!

Possibly extubation  (removal of lung tube) depending on how good everything looks.

25th January 2013

So happy today!

Aydan's (mummy's) necklace has arrived and it is beautiful!

The hand print is Aydan's actual hand print, which they have shrunk down and put on this pendant for me :0)

Aydan had to have another MRI done today.

They wanted to check to see how the brain damage was from 2 weeks ago.

Because he is full of cold at the moment he didn't cope too well with the general anesthetic and has had to be put back on full ventilation :0(

I asked a few people about his MRI results but no one was able to answer me other than they think everything was looking the same as before.....

At least they have managed to put his NJ back in while he was under the general anesthetic!

Apart from that he has been asleep most of the day.

24th January 2013

Today Aydan has been visited by some people from the Rheumatology team because of his high temperatures, he's still around 39.5 in between his paracetamol dosses, and he isn't allowed regular ibuprofen because apparently it can affect your respiratory system, and we don't need anymore problems there!!!

They have taken some bloods and have been asking a million and one questions.

Aydan has also managed to pick up another cold, they have been suctioning lots of horrible green sticky stuff out of his lungs.

I'm hoping that this doesn't set him back anymore!

Little man has been very naughty tonight and has pulled his NJ tube out!!

I shouldn't be laughing but it means that his hands are getting much stronger :0) 

23rd January 2013

Well that nurse was back again last night :0(

and guess what?! she put him BACK on cooling again, despite the nurse sticking up for me last night and asking her not to!!!

his hand and feet are back to ice blocks, and reading a temp of 25 degrees Celsius, and his core temp was right up to 39*

Now that might sound confusing to some people reading this, but if you cool someone too quick and too much, first off you get your hands and feet going cold, which sucks the blood away to your core making your core temperature higher, and secondly if its constantly cooling you, when you go below your bodies normal temperature, your body then starts to fight the cold and makes it hotter to compensate.

I hope that made sense!!

Anyway, that is the first time I have ever had to complain about a nurse, and I have asked that she never looks after Aydan again.

I'm sorry, but making a child lay on something that feels like a block of ice is just cruel, and bordering child abuse in my eyes!! it wasn't necessary!!

I was asked if I wanted to put in a formal complaint, but I said that as long as she doesn't have Aydan again then I wont bother.

I have also requested that Aydan is to be taken off the cooling mattress altogether, because my theory is that his temperature will never be 'normal' if he doesn't learn how to control his own temp again.

So far going well.

He's spiked temps of around 39 all day, but paracetamol has helped dramatically keeping it down.

so.....

Aydan got a haircut today...

but don't worry folks it WILL grow back!!

22nd January 2013

Now it's not often I grumble about the Aydan's care, particularly considering how wonderful his staff have been on ICU. But today is a grumble day.

Last night one of the nurses was a bit rude towards me.

First off she started having an argument with me over the cooling mattress. Now normally he is on something called normothermia, which basically helps to keep his temperature around a normal range. Once his temp hits 37.9 the mattress will pump cooled water into it to help bring his temperature down, but once his temp hits a certain level it will change the water to either room temperature or warm depending on how cool he went.

Now this nurse insisted that it was on 'cooling'.

I don't like the cooling setting, it makes the mattress feel like a sheet of ice and doesn't switch off when he reaches a normal temp, it just keeps cooling until it hits the temp you set it at.

The nurse unfortunately didn't speak English very well, and although I tried explaining it to her that normothermia was OK, argued back with me and obviously waited until I had retired for the night and switched it onto cooling.

Aydan's poor hands and feet were like blocks of ice when I came in this morning and despite having a temperature around 37.5 all yesterday his temperature was now around 38.5....

cooling setting FAIL.

ALSO she was very rude to me and told me to move my chair around the other side (where I couldn't see Aydan) when I wasn't in the way.

20th January 2012

Aydan had another chest X-RAY today.

It is a MIRACLE!! his left, lung, although still slightly white, has pretty much cleared and the blood around his lung has virtually disappeared!!!

I am soo happy!! :0D

19th January 2013

Today I managed to finish Aydan's crochet blanket that I have been working on for him.

He definitely has the best looking bed on the ward now :0)

Here is a very happy moment of daddy getting to have his first cuddles in nearly 2 months!

At the time of seeing this photo I wasn't aware of Aydan not being on the ventilator, but daddy later informed me that they had put him on a special thing called a Swedish nose, which from what I can gather is just a filter to stop particles in the air going directly into his lungs...

Well by the time I went to visit him it was 4pm and I could hear all his machines alarming as his sats had plummeted and he was really struggling to breathe, his lips had turned blue and he wasn't doing very well.

He'd only been on the Swedish nose for a few minutes, but it obviously hadn't helped him at all!!!

Needless to say he ended up back on ventilation and was still struggling.

I told his consultant of the day (I've only seen her twice) that I was not happy that they had put him on the Swedish nose, and he obviously wasn't going to be ready for it as he had only just struggled to come off a ventilator.

I found myself eating my words later on during that day, because a chest X-RAY has revealed that his ventilation/lung tube has been pushed in too far, and has been going into his right lung. His left lung is nearly a complete white-out again, and the collection of blood around it had built up again!!

To say I am heartbroken is the least!!

WEEKS we have been on this ward trying to get that left lung back healthy again, and now its back to being a white-out again. >:0(

He ended up having some of the general anesthetic gas (which stank and made me feel dizzy and have to leave the room) to have his tube pulled out a bit, and he has been put back on diuretics to try and suck out the blood around his lung.  

17th January 2013

Today they have managed to get him off a ventilator and get him on something called a CPAP with assisted breathing!

It's basically him breathing by himself, but with a gentle flow of oxygen going into his lungs, and when he takes his own breathe the machine gives a gentle push to help him.

His CO2 levels have gone up a little bit, but he is doing so well!

This is one step closer to getting him off ICU. :0)

16th January 2013

Today wasn't such a good day :0(

Little man has been having awful withdrawal symptoms and has been doing lots of gurnning, grinding his teeth, and VERY irritated hand movements.

It's really horrible to see as he looks like he is in a lot of pain.

The doctors assure me that he isn't and that he wont remember any of it, and that it is more painful for us to watch than it is for him.

He has been trying really hard all day to open his eyes though and I have managed to get a pic :0)

14th January 2013

Aydan did so well and physio today and did such an amazing job at trying to lift his head!

I am soooo proud of him!

They also had him standing briefly for a couple of minutes with the aid of the physio and a nurse :0)

Here if the video of him trying so hard to lift his head up.

He has also been a cheeky little man tonight!

When I went to say good night to him, I thought he was raising his hand to say good night, but oh-no! He went straight for his ventilation tubes and tried to pull them out!

Little monkey :0).

13th January 2013

Today I went in and found Aydan wearing his cooling blanket again! I believe his temperature went up in the night and the nurse already had the window open, him sat in a nappy and the fan on, so decided it was for the best!

I believe there was some concern over his CO2 levels too, so his ventilation has been put up more. His CO2 levels were around 72 most of the day.

I have been asking the doctors about getting him on some probiotics because he has had terrible diarrhoea since he's been on the antibiotics. They have had a word with the pharmacists and they said that I can give him some, but they don't have any.

After a bit if research, I couldn't really did any liquid ones, and didn't want to try him on the yogurts as dairy doesn't seen to agree with him, so I have just bought him some normal acidophilus and they are going to add it to his milk :0)

I'm not sure it's going to work! I have a feeling it might go too clumpy, but its worth a try!

Aydan had all of his stitches removed today too! His war wounds already look loads better, and they have said that once they have healed a bit and the scabs have gone, that I can start to massage the scars to help them!

I asked on Aydan's Facebook group what people thought was the best thing to put on scars, and out of the suggestions I have decided I'm going to try coconut oil :0)

Aydan's doctors have decided that because he doesn't seem to be suffering any withdrawal symptoms, they are going to start dropping the sedatives a bit faster.

I've had a good chat with the doctors today and they have said that his chest X-rays are showing that his lungs are near enough perfect again, but there must be something going on that they don't know about because with lungs looking that good they would expect him to be off the ventilator.

They're not sure whether the brain damage is effecting his breathing, Whether the surgery has damaged his diaphragm, or whether he has a lot of scarring inside his lungs, or whether its still all down to the sedatives and he's still not strong enough.

We have also noticed that Aydan's eyes now seem to be pointing in separate directions and he's still not trying to focus on anything, again they think that might be the sedatives/brain damage.

They are going to order some more specialist tests. If nothing shows up then they are going to contact some actual specialists and see if they can suggest anything! I have a feeling its going to be a case of 'wait and see' personally!

12th January 2013

Aydan's temperature has been a bit naughty again today :0(

I feel like his high temps are holding him back from recovering, but they don't know what's causing them still!

Everything has been off today, his CO2 levels in his blood have been back up in the 90s and his pulse and blood pressure been up again.

I managed to convince the nurses to take the incontinence sheets out from under him, as they really don't help his temperature.

I also managed to get them to put him lying on his belly again, as that really helped with his CO2 levels as they went up to 115 at one point. His O2 levels have been around 92% all day.

Since being on his belly his CO2 levels have been around 88, so a slight improvement! I have a feeling that they he been getting overly excited again and been weaning him off the ventilator too quickly, so they have put the pressure up again and increased the rate.

It makes me feel very sad when he has another bad day after doing so well :0( although I do have to say that he is only on 45% oxygen, and is only on around 14 gentle puffs an hour, so they can increase his ventilation a lot of need be!! His PH of his blood has been fine, so he's compensating for the high CO2 levels!!

As you can see by the picture, he is looking really happy now he is back on his belly!

There have also been concerns over blood on his left lung again, and possible signs of an infection around his left lung, but his Infection markers have been coming down still, so they're not sure!

Aydan had also had his catheter removed today! :0)

We'll soon have rid of all those wires and tubes!!

11th January 2013

Today was a very exciting day involving his physio!

I was asked to bring in one of his sisters or brother, so as I'd promised Poppy she could come next, Poppy came!

It was great, they took Aydan out of bed and put him on a mat on the floor!

Aydan was the most awake I've seen him in a long time!

Although he was a bit naughty at one point and pulled his cannula out, and we had a lot of blood everywhere! Lol!!

He has even been trying to open his eyes!!

10th January 2013

Noooooooo!!!

They rolled Aydan over today and the poor little man has bald patches appearing on the back of his head!! Sob!!

Mind the nurses have been very surprised that he hasn't already lost all his hair because apparently when your body is concentrating on mending itself, it leaves out the unimportant stuff like hair!

My poorl little squishy! Lol!!

9th January 2013

So today was a very good day.

They have decided that he doesn't need splints for his feet because his feet are OK!

Aydan got weighed, so of course I got to have my first cuddle in nearly 8 weeks!!! :0D there is a picture below! :0)

He is now 13.9kg, instead of 13kg when he came in! Aydan likes to be backwards and actually put weight ON whilst in hospital!! Lmao!!

He also had his first session of physio that wasn't just on his chest! Aydan was made to sit up and then was moved in circular movements to help strengthen his core muscles!! He looked so relaxed it was great!!

They are also slowly taking him off the sedatives and hope to have him off then by next week!

8th January 2013

Today was another good news bad news day.

Aydan's neurologist suggested that he went for an MRI because of the concerns over his lack of movement and high temps.

So the MRI has shown that Aydan has suffered brain damage at some point since his CT scan a few weeks ago.

They said the brain damage was in the top right of his brain, something to do with the sensory part, so may affect the way he senses things, and may also affect movement on the left side of his body.

They don't know what has caused the brain damage, it could be a clot, it could be a bleed, it could be lack of oxygen! They said they will probably never know :0(

Having said that though he is moving around an awful lot more than he has been, so its looking promising.

They have said tomorrow that they are going to have a word with physio and hopefully get him some splints for his feet, and a new mattress so they can start sitting him up!

There is very exciting news too!! Aydan is going to be weighed tomorrow!!

Squeeeeee!!!!! :0D

7th January 2013

Today there was concerns over Aydan's spleen.

Apparently you could feel it really well, and normally you can't feel it at all.

An ultrasound confirmed that his spleen was definitely enlarged, and I'm sure the sonographer said it was the size of an average 4/5 year olds.

He has been put back on antibiotics today and antifungals, as his infection markers have started to rise.

They are still concerned about the lack of movement he is doing, so have asked his neurologist to come and see him.

They have been mentioning a condition where patients can get extreme muscle weakness, which would mean Aydan's recovery time could be much longer.

Tonight they are trying something new as his CO2 levels have been quite high, so they have put him on his belly!!

Little man looked VERY comfy I have to say! :0D

5th January 2013

When I went to see Aydan this morning I had to giggle! He was breathing that hard that the alarms on the oscillator was going off!! Lol!! :0)

Lets just say that they have him back on a normal ventilator again now!

His CO2 levels are still around the 80's but they are not too worried, and expect it to be higher because of how damaged his lungs were.

I also have some other good news!

Aydan has started to move his fingers again today and has been doing a bit of lip twitching :0)

We went to build a bear today for Aydan's brother's birthday, and while we were there we picked up a special bear for Aydan.

It is a husky surgeon dog, and we have called it 'ECMO!!' Lol!!

And if you press his belly you can hear Alex, Poppy and Daisy saying 'we love you Aydan!' :0)

4th January 2013

Today they have taken Aydan off the nitrate, which is added to the oxygen going to his lungs.

I believe that it helps the blood supply in his lungs, and the oxygen and carbon dioxide exchange.

At first they were talking about giving him Viagra!! Apparently it helps get patients off nitrate. But he was a very good boy and didn't need it in the end :0)

Today I had a tattoo done on my wrist for my little man! It is a blue ribbon and the word 'hope'

The ribbon for tuberous sclerosis is blue.

3rd January 2013

Today I DID IT!

I went and gave blood!!

The last time I went and gave blood was over 10 years ago, and now I realise how important it is to be able to donate.

The nurses will be working out how much blood Aydan has had since he has been here, so once I know that I will update it on here. :0)

On to slightly sadder news...

Aydan still has a really high temperature but his infection markers are still really low, which is baffling the consultants.

They don't understand why his temp is up so high and he isn't responding as much either.

Before he came off the ECMO he was responding really well to the sound of our voices, but now he's just lying there :0(

Just when I thought he was getting over the worst it looks like something is going on with his brain now too :0(

2nd January 2013

Aydan had a very good pampering session today! I've been dying to get my hands on his properly for weeks now!!

I got to cut his talons off, as I wasn't allowed to cut his nails before because of the heparin!

I washed his hair and gave him a good bed bath and rubbed in lots of moisturise cream :0)

Aydan also had 2 chest drains removed today! I am so pleased!! He only has one left now! I can't wait! He's been looking like a porcupine!! Lol

We also had some incredibly good news regarding his lungs, since coming off the ECMO his lungs have suddenly got loads better!!

I can't begin to tell you how proud I am of my little fighter! :-D

I have enclosed a before and after picture of his X-rays, the before was when his lungs were really bad, as you can see there is no air in there and the lungs are very white and very poorly.

The other one is what his lungs looked like today, and that is the blacker one!

I am just amazed at how far my little man had come! He's amazing all the consultants and nurses too! My little man really does have a love for life, and his sausages and spoons :0)

1st January 2013

Happy(?) new solar cycle :0)

A new year a new beginning?!

So after the week(s) from hell, today was finally a good day.

I got to change a pooey nappy!!!

Now that might not sound great to you all, but I have been dying to change his nappy for weeks now!!

There have been talks of removing his chest drains over the next few days as he's hardly bleeding from them anymore.

AND there have also been talks about the possibility of me having a cuddle in the next few days!!! :0D!!

Here is Aydan wearing his cooling blanket to help keep his temperature down.

31st December 2012

You've heard about them, those phone calls at 1.30am in the morning. That can only mean one thing, something really bad has happened.

Mike woke me from a deep sleep, so I had to get up and answer the phone.

Aydan had taken a turn for the worse, his temp had shot up to 42 degrees, and his pulse and heart rate were jumping up and down. The nurse said that he came very close to having a cardiac arrest but they managed to get some emergency medicine into him ASAP and things were looking very unstable.

I didn't hear half the phone call, but once I put the phone down I ended up having a massive panic attack that lasted for hours! My bowls evacuated themselves (on the loo of course!!) and my legs felt like jelly and I could hardly move! Each slight noise sent more adrenaline running through my body and I felt worse and worse.

I managed to get a few hours sleep, not through choice you understand, because I had to! I wanted to be with Aydan but my body physically wouldn't let me!

When I went to see him in the morning things had stabilised a lot more, and they were in the process of changing all
His old cannulas for brand new ones, just incase any of them were causing an infection.

They had to put him back on an oscillator as his CO2 levels were quite high, an they just wanted to be safe.

On the plus side his chest drains are hardly leaking any blood at all, and he's only losing around 15mls an hour!!!

30th December 2012

Another day, another day that feels like I'm living in hell.

So his chest drains have been bleeding still, and since having another dose of surfactant the other day, and being made to lie on his drain sites for quite a few hours, he's now bleeding more again.

A chest X-ray revealed that the clots have returned, and they want to get them off before they go solid again.

The operation didn't take as long today, but it certainly felt it.

When he came back he was bleeding loads again, and I was beginning to feel ill! I couldn't believe that we were going to have to go through another lot of bad bleeding again.

Aydan had another chest X-ray and a decision was made.

Aydan couldn't go through all this again.

He was to be taken off the ECMO! I mean REALLY taken off the ECMO, they were going to take the cannulas out.

The consultants took us into another room and explained the situation to us.

Basically his right lung was as good as they could get it while on ECMO. But his left lung was now stuck in a vicious cycle. The heparin was making him bleed. He needed the heparin for the ECMO circuit, to stop that clotting, the bleeding was causing clots. The clots needed an operation to remove them....

We didn't know if Aydan would survive or not! His last 2 attempts of coming off ECMO weren't great!!!

Up to now he'd been on the ECMO machine for 5 weeks and 4 days. That's nearly 2 weeks longer than they said. And he was now the longest patient in Alder hey to have been on ECMO.

We were sent off the ward for the second time that day, and began waiting.

Well you know what, my little man made it!

He made it on to a normal ventilator with just his lungs helping him!

The next few days will be tense, as he could have a set back any time, and they've said that he won't be able to go back on ECMO again. His veins were too thin and had fused themselves to the ECMO cannulas.

28th December 2012

Well there is an amazing difference in Aydan's chest X-ray today, just from yesterday!

I quote 'the best X-ray he's had in nearly 6 weeks!!!!'

Aydan is still responding to us! It's not a lot, but its nice that he responds in his own little way! :0)

I do have a video of him responding to his music, but I can't add it right now.

27th December 2012

Aydan's lung X-ray is looking better today than it has for a while.

He has been taken off the oscillator and put on a ventilator.

Apparently the ventilator should help push his left lung out more, and hopefully help reduce the chances of the blood clots returning!

I really hope so :0(

26th December 2012

After the past couple of days, today was decided that it would be a relaxing do nothing day!!!

His bleeding has been around 25mls an hour so he's still having lots of blood products but not as much.

25th December 2012

So here it is!

CHRISTMAS DAY

A day where I have to put a brave face on for my children, while knowing that Aydan is really poorly in hospital and bleeding loads.

I don't really remember opening my presents, when asked later what I had I couldn't answer because I couldn't remember!

Just so long as the kids didn't notice something off then that is all that matters!

I have to say that our Xmas dinner was really nice. The staff on ICU had gone above and beyond and had organised that we could all go and eat our dinner next to Aydan's bed.

It was bizarrely a really nice meal considering the circumstances. (Pic below)

24 hours after Aydan had his operation had arrived and He was still losing on average 300mls of blood an hour through his chest drains, and no amount of platelets and cryo, blood etc. was helping.

Aydan had received nearly 5 litres of blood products in that 24 hours alone :0(

If Aydan survives, I will be donating as much blood as I can for as long as I can.

It's not until something like this happens that you realise how important it is to donate blood.

The decision was made to reopen Aydan's chest and to have a real good look around to see if there was a way of stopping the bleeding.

MERRY CHRISTMAS

*sigh*

This operation took 4 hours, and once again the whole ward had to be shut down!

I could tell by the look on some of the other parents faces that they weren't happy about this! I can understand in one way, it is Christmas after all!

But what annoyed me the most was having to comfort another couple!

I was leaving the ward after they shut it, and this couple got so hysterical that they thought something was wrong with their child, and I ended up comforting them!!

Well my readers will be pleased to know that Aydan once again survived his operation. :0)

Apparently they sprayed on loads of this special glue and packed in this special stuff that dissolves, all into his chest.

His bleeding dropped to 40ml an hour and I was so relieved!!

Here is little man after his operation.

The bandage isn't as big as I was imagining.

24th December 2012

So just when things start to look better, another blow takes you down again.

Aydan's left lung is getting worse, and we've been told that the blood clots haven't disappeared from around his lung after all.

They have decided that they have no choice but to operate.

Trying to put a brave face on for my kids was truly difficult. All I kept thinking about was how close it was to Christmas, how would I be able to function if something happened to him so close to Christmas? I wouldn't be able to put on a brave face for my other children. there's a limit to how much I can act!

Yeah, I come across as a strong woman, I might look like I'm made of hard stuff, but inside I feel every bit of pain and worry that everyone else does.

The operation took around 3 hours to do.

The whole ward had to be shut down for this time... Again...

Aydan survived the operation, but because of the heparin he needed to be on the ECMO machine he was bleeding really heavily from his chest drains.

What they removed from his lungs was truly awful!

It was no wonder his left lung wasn't recovering!!

I have a photo here:
http://s1262.photobucket.com/albums/ii608/AydanBransMommy/?action=view¤t=7BA5542C-7EF7-401B-8578-754D79C703ED-6741-0000096D0279F8F6.jpg&evt=user_media_share

I haven't posted it directly on to here because its pretty awful and might make people feel sick.

You have been warned!!

This was only a tiny amount of what they got off, and his whole lung was covered in the same awful stuff!!

No sleep for me tonight!

23rd December 2012

Today Aydan had a special visit from Santa!!

How lucky was he?!!

22nd December 2012

Aydan has started to move so much more these last few days!

Whilst I was sat next to his bed doing a bit of crochet, I was suddenly aware that his little arm was waving about in the air!

So I literally threw my crochet to the ground and held his hand!

I gently squeezed his little hand and he was squeezing back!! I was so happy!! :0D

Now anyone who know little man, knows that he loves people's faces, and he loves honking noses!

So I took his hand, and put it on my nose, and next thing he squoze my nose that hard I thought he was going to cause a nose bleed!! And his lips started twitching like mad!

I swear that if he hadn't got all those tube down the back of his throat, and he went on stupid amounts of sedatives and paralysing drugs, that he would have given the biggest cheekiest giggle you could imagine! :0)

20th December 2012

Today I finished a special Xmas blankie I had been working on for Aydan!

He now had the most festive bed in the hospital!! ;0)

19th December 2012

Aydan had an ultrasound of his chest today and it looks as though the clots around his left lung have disappeared!! Woo hoo!! :0)

It was decided that today would be the day they try to take him off ECMO.

When they clamped the neck cannulas I was very very nervous.

And bless him, he did ever so well, he lasted a good half an hour before having to put him back on the ECMO machine.

Sadly his O2 levels dropped down to 60%, but on the bright side it was better than the 20% it fell to the other day!!!

The ECMO machine had become very clotty so he had to have it all changed again.

I really hate it when he has the machine changed, each time it's changed it knocks him off his healing quest by a few days, and you can really see it in his face and on his chest X-rays.

18th December 2012

Aydan's neck cannulas have started bleeding quite a lot today and they made me feel really queasy!!

He has been having lots of blood products to try and stop the bleeding, but its not really been helping!

The surgeon came by to have a look and he was desperate to just take him off ECMO, but he was told he wasn't allowed! Lol!!

17th December 2012

It's been a pretty slow week, you could say no news is good news, but every day feels like a year, and every day feels like I'm living in hell!

Aydan has started gagging on his mouth tube for his ventilation. So today they have replaced it with a nasal one!

I can now kiss his yummy lips again :0)

13th December 2012

I had the most beautiful smiles off Aydan today when I talked!

I love my little man sooo much! :0)

12th December 2012

Today was a very sad day.

Aydan's consultant has said that she fears his lungs may never get better and that we should be prepared.

His lungs aren't recovering the way that they were hoping they would, and she thinks there are still holes in there :0(

I'm trying to remain positive.

There must be something else they can do right?!

Lung donor has crossed my mind.

I just know that they can't give up on him! Not yet! He's fighting sooo hard!!

If his lungs don't recover then he won't be able to come off ECMO, but he can only be on ECMO for a few weeks :0(

I must stay positive!

He can do this!

Aydan loves life too much!

11th December 2012

Today was a BIG day.

Today was a day that Aydan would make Alder heys unofficial record books.

Today was a day where they would take Aydan to have a CT scan.

Now you might not understand the importance of this, but apparently they have a brand new CT machine downstairs, now normally when they do CT scans they use the upstairs ones, and that means they don't have far to travel, but Aydan is on ECMO, and they have never transferred a patient that far on ECMO, in Alder hey.

We felt like Royalty, they had to shut down most of the downstairs of the hospital, security guards blocked every entrance, and it took sooo many of the m to move him! There had to be so many pushing the bed, so many pushing the ECMO circuit, his emergency drugs, then they had a spare ECMO circuit, plus surgeons in case anything bad happened!!

It was planned out very very carefully, and we had to move very very slowly!

But we made it there an back!

I have added a pic below to show the madness Aydan created!

The good news was that Aydan's brain scan looked good. There were no obvious signs of brain damage, a few hazy patches, but nothing significant.

The chest one was the most worrying as I wasn't sure whether they would tell me his lungs hadn't returned back to where they should be, and that it was all a waste of time.

His lungs had thankfully returned to where they should be, but his left lung was showing that there was a significant amount of blood clots around it, and they said he will probably need an operation to remove them :0(

On another note he had a 3rd lot of surfactant.

10th December 2012

Today Aydan had a 2nd dose of surfactant!!!

All I can say is, thank goodness for the NHS!!!!

I had a really amazing thing happen today too! As I walked in to see Aydan, I said 'hello beautiful!' Like I normally do, and I'm not joking, his whole body reacted to me being there!!!

It was only a twitch and a little smile, but when you're so used to not seeing anything, this was the best thing in the world, and it really made my day :0)

9th December 2012

Today Aydan was given a dose of a special medicine called surfactant.

Now you may be wondering why I have taken a picture of this moment, but apparently this medicine costs a lot of money!

This one syringe of medicine cost nearly £3000!!!

Apparently its a chemical that is naturally produced in the lungs, and it helps stop your lungs from fully deflating every time you breathe out.

Imagine blowing up a balloon. The first breathe you blow in is really difficult.

If you let the balloon go down again, the first breathe is difficult again.

But the SECOND breathe is so much more easier to do.


That's what the surfactant does, it kinda keeps the first breathe in, and makes the second one easier :0) (I hope that made sense!!)

So here's the pic to remember this event...

7th December 2012

Well we finally had some good news today.

The ECMO machine has cleared itself out over night! Or rather I presume Aydan's body has cleared it out over night!

They believe his blood had become a bit 'sticky' because of all the blood products he had yesterday, when he had the op.

Aydan had a new teddy bear today, or rather a care bear!

The nurses had been using blankets to help lift his arms up, and help his chest, but we decided a teddy would look much nicer ;0)

Here is a cute picture of that!

6th December 2012

Today we were told that the surgeons were going to have to do something about the pressure in his chest. The ECMO circuit was really starting to struggle, and the blood flow in it kept stopping.

Once again the ward was closed down as they attempted to get another chest drain in.

Thankfully it all went well! The surgeon managed to get 360ml of blood off his chest, and it was still coming down the chest drain!

A chest X-ray revealed that his heart had returned to its rightful place in his chest again, and everything was looking much better.

With the whole good news/bad news thing, there is now a possibility that he is going to have to have his ECMO circuit changed again as his crystal growing is messing up the circuit, and it looks like there are big clots forming.

I really hope this isn't the case as this will set his recovery back by a few more days again :0(

5th December 2012

Today wasn't such a good news day. That's the problem about being on ECMO, one minute you can have really good news, the next you can have awful news.

It's like the one step forward, one step back business...

His daily X-ray showed that his heart had been shoved over to the side, and his ECMO machine has been alarming loads, this means that he has a lot of internal bleeding in his chest, and the pressure from it is squashing everything :0(

They have decided to put him back on the oscillator because this should help keep his lungs inflated and help stop anymore internal bleeding.

Now, I have to say that this is really worrying me.

Last time he was on this machine they said it was damaging his lungs more than they already were, because of having to use really high pressures to get the oxygen into his body.

It's also worrying me about the holes that were already there! He's not been on the ECMO for that long, so if the holes aren't repaired yet (I googled and it said could take 6 weeks to repair) then it would be like picking a scab off! :0(

I had a word with the consultant too because I was worried about what would happen once he got to being on ECMO for 4 weeks as we were told 2-4 weeks, and he's already been on it a while!

She said that so long as Aydan was coping really well on it then it would be fine to continue if need be.

Well at least that's one relief! I was starting to panic that they would just have to turn it off or something!!

3rd December 2012

Today there was a bit of a worry that he might be having seizures underneath all the paralysing and sedative drugs, so I have managed to convince them to start giving him his vigabatrin again.

Some good news today, he has been finally cleared of the RSV bug!! Thank goodness for that!

He also had a bronchoscopy today to have a look inside his lungs. They are very worried about what the inside of his lungs might look like, as they think a lot of it may be very damaged. They couldn't go very far into his lungs, but from what they did see everything was looking OK.

1st December 2012

When I went to see Aydan today it was a bit of a scary moment. He was just weeping blood from all of his cannula and drain sites.

Apparently his blood pressure had gone really high in the night, which caused the bleeding, they believe his cannula was blocked so they gave him a new one at the top of his other leg, and when they started finally getting his blood pressure medicine in, his blood pressure then went really low!! Lol

On a good news note though they have said he can't start having milk again, he has been put on something called neocate? I believe it's a special one that is good for babies with delicate tummies.

He is only allowed 5ml an hour the poor thing, but they will increase it over the next few days if he tolerates it well.

30th November 2012

Today Aydan had to have his ECMO machine changed because the oxygenator started to fail! I presume that's because of all the crystals that he keeps growing!

The ward had to be closed down again while they changed the machine over so I didn't get to see what happened, but I was told that he was off the machine for around 3 minutes and his O2 sats dropped to 20% :0( just goes to show that Aydan's lungs are now very poorly!!

We have been told that because the machine is all brand new and clean, his body will start fighting it again, and it will set his recovery back by quite a few days.